Pumping Marvellous Foundation statement and response to the Observer article dated 23rd July 2023
“Revealed – Drug firms funding UK patient groups that lobby for NHS approval of medicines.”
The Pumping Marvellous Foundation receives income from a wide variety of sources such as for-profit companies, trusts, grants, fundraiser activities, online shop, and the NHS.
These funds are used for –
- Helping patients – Creating, printing, and distributing patient educational information. In 2022 -2023, the charity issued, free-charge, over 200,000 patient education booklets to NHS teams across the whole of the UK. This is used to educate and support people and their families living with heart failure. We provide and facilitate peer-to-peer support for patients and their families through safe and moderated online support groups. We disseminate pertinent information to patients and their families about heart failure, whether living with it or advancements in ways of thinking, care, and treatments.
- Building awareness of Heart Failure through activities such as social media campaigns, radio advertising, mass transit advertising through our campaign bus and working with all stakeholders, including NHS England, Cardiac Networks, Integrated Care Boards(ICB), Integrated Care Systems (ICS), Primary Care Networks (PCN), Scottish Medicines Consortium, NHS Scotland and Public Health teams.
- Promoting patient insights across all domains to help a broad spectrum of perspectives to be considered in addition to clinical and cost-effectiveness. This includes attendance at conferences, media, podcasts, videos, and blogs.
- Providing Public and Patient Involvement (PPI) in UK and International research studies as a co-applicant, collaborator, PPI lead and/ or PPI participant.
- Operating the charity.
We declare all income streams and activities in our accounts and to the charity commission. All of which is publicly available after the appropriate reporting periods.
The charity has robust procedures in place to ensure funding from any source is ethical and reflects the charity’s standards and objects filed with the Charity Commission of England and Wales.
We meet all the standards required by NICE and provide the necessary information in a timely manner.
The Pumping Marvellous Foundation, formed in 2013, is the only organisation advocating for the 1,000,000 people with heart failure. We see this as a failing of the system that only one national charity represents such a large cohort of patients. To this point, we have no choice but to represent these people’s voices with NICE at a national level.
Patient group funding is a challenge throughout the UK. Without life sciences funding, patient groups like the Pumping Marvellous Foundation could not support heart failure patients and their families in early diagnosis, timely specialist intervention and learning to live with their heart failure to the degree to which we do. Naturally, the life science companies providing funding in specific therapeutic areas will be the ones who have a specific interest in those conditions. However, the Pumping Marvellous Foundation is wholly independent of any of the views expressed by any income source and is purely focussed on what is right for our beneficiaries, people living with heart failure.
Nick Hartshorne-Evans – Founder and CEO.
Angela Graves – Queens Nurse – Chair of the Trustee Board.